A Letter to the 12-year-old me, who doesn’t know she has endo…

Dear Little 💛ribbonrx,

This is you, from the future. I know that seems kind of strange, but I wanted to give you this special opportunity, brought to you by an alien known as The Doctor (see that Blue Police Box in the backyard?) to let you know that everything is going to be ok and to tell you about something really important.

imageThe date where I am is July 23, 2016. If I’m timing this right, the day where you are is July 24, 1998. And that thing that happened to you yesterday at Jenny’s 12th birthday party? I know you’re really excited about it! What girl isn’t excited about getting her first period? You’ve been planning for this moment of reaching adulthood since 5th grade health class, making sure you had a discrete stash of tampons in your locker at school just in case it happened, even though all throughout 6th grade, it never did. But now it has, at the ripe young age of 12! Yet I know you felt like trash all day today because Mom was so excited when you called her she forgot to tell you to take Motrin for the cramps and you felt like you were wearing a diaper because Jenny didn’t have any tampons. But you did an amazing job in the talent show at Fine Arts Camp despite all that! Just use tampons from now on, ok? They’re a must for dancers, if you get what I’m saying. No bleeding through leotards or white costumes allowed! Plus tampons are much more comfortable, in my opinion at least.

imageI know you learned all about this “girl stuff” in 5th grade two years ago and you’ll learn it all again in health class in 7th grade this upcoming school year. You’ve already learned that menstruation is a normal part of being a woman, during which your body sheds the lining of your uterus that has built up each month (or is supposed to) in preparation for the implantation of a fertilized egg to make a pregnancy. When your body doesn’t become pregnant, this lining is shed through your vagina. Obviously, this is what happens most of the time unless you get pregnant, and *spoiler alert* even right now I don’t know when that’s going to happen in your life, and I’m almost 31. Sorry. I’m also sure you learned (and have already experienced) that periods can be painful; good girl for toughing it out through that talent show, because I still remember feeling like a whale in that red dress dancing to “Valentine” by Jim Brickman and Martina McBride as the cramps threatened to keep me from dancing. At least the dress was red, just in case…

But there’s something on the way that I want to tell you about that is tremendously important and education of which is horribly absent from the stage of sexual health education all throughout the world, both where I am and where you are in time. It’s a very common disease, but no one ever talks about it because it’s a “below-the-waist” problem. It’s a disease called endometriosis. And guess what? You have it.

For a disease that affects 176 million women throughout the world (that’s about 1 in 10 women), you’d think awareness of it would be right up there with other common diseases such as diabetes and heart disease. But many cultural taboos surround the disease because it is a disease of the female reproductive system, which people generally aren’t comfortable talking about.

imageIn school, you were taught that having your period is uncomfortable. There is truth to this; mild cramping, known as dysmenorrhea, is to be expected. But painful periods are not normal. Cramps that make you double over are not normal. Cramps that make you miss school are not normal. Basically, if your period is interfering enough that you can’t participate in normal activities due to the pain, that is not normal. It’s unfortunate that this isn’t really explained in school. You were taught that periods are painful and it’s our lot in life as women and we must tough it out! That’s not true. Painful periods are the primary symptom of endometriosis.

There are, unfortunately, individuals out there who believe that endometriosis cannot happen in young girls and teenagers; that it is a “working woman’s disease.” This is false. Symptoms of endometriosis can occur as soon as a girl’s first period. One reason women aren’t typically diagnosed until their late 20s or early 30s is that this is around the time many women try to start families and experience other symptoms such as painful sex and infertility. However, due to misconceptions, teenagers are often forced to tough it out, being told it must all be in their head or that they’re not tough enough or are just complaining too much. They then begin to lose any hope that they can live life free from painful periods.

imageAn early diagnosis is key for relief of symptoms and prevention of any long term problems, such as infertility and loss of reproductive organs due to advanced disease. Not to mention early diagnosis and treatment can save you years of pain. (I’ll let you in on an unfortunate secret- your symptoms will start around the time you’re 13, but you won’t be diagnosed until you’re 28. You have a lot of pain to get through yet, my dear.)

Assuming I can’t go back into the past and change events for you, there’s nothing that can be done for you now; your course is set in stone and you will have some big challenges to go through because of endometriosis. But you’re strong enough to handle them. You have endo- you’re tough. Girls and women with endo are among the toughest there are because we have to be.

If there is anything anyone could have told me when I was your age to make this all a lot easier (and maybe even lead to a diagnosis), it would be the following:

  1. Just so you know the actual definition, endometriosis is when tissue that is similar to the tissue that lines the inside of the uterus grows outside of the uterus, usually on the organs of the pelvic cavity and sometimes abdominal cavity (rarely even further).This tissue breaks down and bleeds every month just like the tissue inside your uterus because it responds to the same hormones in your body that cause your period. That’s why endometriosis is so painful!
  2. Keep close track of your symptoms, including intense pelvic pain both during and inbetween your periods, heavy bleeding, and pain while having bowel movements or urinating. Pain that keeps you from dancing, for example, is to be noted. (Nothing will stop you from dancing because you’re a tough cookie, but getting through next year’s production of The Wizard of Oz is going to be painful…but you’re only onstage for 5 minutes per show, so just do it! And keep in mind that you are a dancing painkiller [poppy]…)
  3. Know that endometriosis exists and that it’s something that young girls and teenagers can have.
  4. Don’t be afraid to speak up to your doctor if you are having bad periods. It’s not all in your head! If you say you are in pain, you are in pain.
  5. The only way to definitively diagnose endometriosis is through a diagnostic laparoscopy, a very simple surgery. Don’t believe anyone who tells you that certain drugs can help diagnose you; they may help with your symptoms for a few months, but your pain will be back as soon as you stop taking them. And some of them can have permanent side effects, so you may want to steer clear altogether.
  6. If you have a physician who even mentions the possibility of you needing a hysterectomy, walk out of that office and never go back. A hysterectomy will not cure endo and you should not be making decisions about your ability to reproduce when you are a teenager.
  7. When surgery is performed, ideally it should be with an excision specialist and not a standard OB/GYN who doesn’t have the skill to properly remove all endo from wherever it appears.

image

Share this information with your friends! Statistically, you know enough girls that there are at least a few out there who have endo, although the chances of them knowing it are slim to none.  Help them to not have to suffer, either.

You’re going to be fine. You will have surgery with one of the world’s best endometriosis excisionists and he will give you the closest thing to a cure. Endo has no cure, just a 10-20% recurrence rate if excision is used. So you will get to remission!

I wish I could do something else to make it better. I can tell you that it’s going to be a long, painful, tough fight, but you will emerge the victor. So don’t stop being strong, because I already know you are.

Love,

30-year-old You (💛ribbonrx)

5 thoughts on “A Letter to the 12-year-old me, who doesn’t know she has endo…”

  1. WOW. I freaking love this. Why is hindsight always 20/20???? I had HORRIFIC periods as a kid. I was thrown on the pill for years. Cut to present day with 2 brain tumors and rare disease.

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  2. This is good stuff. I wish everyone could know that these kind of painful periods ARE NOT NORMAL! I could have realized I had a problem much earlier, but I thought everyone had those kind of pains…

    Another thing I would tell my younger self (maybe myself in my 20s) would be a warning about fertility. I have now lost my ability to have my own biological children as a result of this disease. I don’t know what I might have done differently, but I wish I’d had a more realistic expectation about infertility. Instead, I took for granted that babies would just happen for me and the reality has been really devastating.

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  3. Very poignant. I didn’t know much about endometriosis until I found out I had it at 37. My symptoms started around 24 and peaked in my early thirties when I would stay up all night crying in agony. Still I thought it was just painful periods. One thing I wish people knew is that you can have extremely light, short periods with endo. That was one of my symptoms and I had stage 4 endo, everywhere. Very, very painful but very, very light bleeding. GPs / family doctors are incredibly, shockingly ignorant about most reproductive stuff (in my experience) so spreading it by word is a good idea. Excellent post!

    Liked by 1 person

  4. Reblogged this on ribbonrx and commented:

    Continuing to spread endometriosis awareness since it’s March, here’s a slightly off the wall, yet informative, post involving endometriosis and time travel. 💛🎗

    Like

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